Why genetic testing is a family’s right
Pregnancy to most women is a simple thing, but pregnancy to some can create the biggest decisions that they will ever have to make in life.
I fell pregnant at 16; it wasn’t planned, as you can imagine, and it was a huge shock. 24 hours after my son was born he was diagnosed with Down Syndrome. He is now nearly 10 years old and I couldn’t be prouder as a mum. It’s amazing what we can deal with when thrown into a situation but if I was given the choice before he was born would I have dealt with that in the same way? Probably not.
My son’s diagnosis was the genetic form of Downs called Translocational Down Syndrome. This meant that my chance of having another child with Downs was incredibly high – 1:5. This made my decision to have another child very difficult as I knew I had to decide, if and when, about so many of the different options available.
Do I have tests done? What would happen in the worst case scenario? And what would we and others think? Say? Or do?
When I fell pregnant again recently I wasn’t ready to play God with a child’s life but we knew that it wouldn’t be fair on ourselves or our disabled son if we had another child with medical problems. It may sound selfish but my son has enough of his own and I was sure that given the choice, coping with 2 children with similar, if not worse problems, I knew we wouldn’t cope as a family. Many do and I take my hat off to them, but for us, it wasn’t right.
Many tests are available for genetic testing whilst pregnant, the CVS and Amniocentesis are the main ones that you may have heard of. The results are quite accurate and decisions can then be made on your next step as a family. Best case scenario being that baby genetically is fine, worst case scenarios being the results are positive for a disability and we have to decide where to go from there.
We were lucky our decision was made relatively easy as the tests came back that our baby didn’t share my genetic disorder. What would we have done if it was the other way round? I’m not sure if I’m honest. It would have been hard to decide, people can change their minds when actually faced with the decision rather than just discussing what ifs. There is nothing wrong with not knowing what you’d do until you do it.
There is no shame in making these decisions either and I know many disagree, but only we know what we can and can’t deal with in our lives. Everyone is different and we all need to realise this. At times where thinking of the bigger picture is the only way to make such a huge decision… you need to remember, only you know what is best for you.